If you were to look at me, I don’t think you would be able to tell I’m ill.
As Facebook’s Vice President for Europe, the Middle East and Africa, I’m constantly on the move. Life is a whirlwind of meetings, interviews, travel and being a mum of four. I love being with my family, watching box sets and I’m a great fan of Marvel comics!
What you wouldn’t be able to tell just by looking at me is that I’m actually living with incurable cancer.
I didn’t know that either.
I was diagnosed with Follicular Lymphoma which is a blood cancer in November 2016 at the age of 45. The diagnosis was a complete and utter shock. I was fit and healthy and I didn’t even feel ill. The only sign something was amiss was a lump in my groin which was the size of a pea. A scan soon revealed that there were tumours up and down my body.
Telling my family I had cancer was heart-breaking. How do you tell your kids not only that you’re living with cancer, but also that there’s no cure? It was the hardest conversation I’ve ever had to have.
Follicular Lymphoma isn’t a type of cancer that people know a lot about. I doubt you’ve ever heard of it. If you have Follicular Lymphoma you could live for 20 years or you could be dead within a year. Neither option is good if you’re only in your 40s like I am.
Follicular Lymphoma is a slow-growing cancer so patients can sometimes opt to go for a long time without treatment and there can be long gaps between treatments too. In my case, I originally opted for ‘watch and wait’, having my cancer monitored as opposed to treated as unlike with other cancers, there’s no benefit in treating Follicular Lymphoma early as we can’t cure it. It was only when my cancer started to grow near my kidneys and the doctors worried it might give me kidney failure, that I started chemotherapy and immunotherapy. Fourteen treatments followed over six months and today as I write this, I’m in remission. Sadly this doesn’t mean I won’t need chemo again in the future.
People often ask me what I’ve learned from living with cancer and whether I’ve changed anything about my life as a result. These aren’t unreasonable questions. If you had the same diagnosis as me, what would you do? Quit your job? Travel the world? Getting cancer does make you take a long hard look at your life and think about what you want to change. But the truth is, there’s nothing I want to change. I’m happy with what I’ve got and I want to give all areas of my life the same love and attention I gave them before I was diagnosed.
Luckily Facebook has been a very supportive place to work. When I was first diagnosed they told me to take some time off and do whatever I needed to get better. But for me, I think that’s the worst thing to do so I said I wanted to carry on.
I’m really honest about having cancer at work. I have a girlfriend who was diagnosed with breast cancer who hadn’t told her boss chemo was looming. I asked her, “what’s the fear here?” She said the fear is “maybe I won’t get the work”. But I said, “How much stress is that putting on you?” Of course once she told her boss they were very supportive. For me it was important to be honest and open and to bring my whole self to work.
I don’t want to paint living — and talking — about cancer as easy because it isn’t. What does make it easier though is having a good support network. I’m incredibly grateful to have my family, my friends and my work, but I’m also part of a Facebook group called Living with Follicular Lymphoma for people who have the disease around the world. I’m now a co-admin of the group which is the biggest group of its kind. The group is a great place to go for support and advice. We use the group to ask questions about symptoms and treatments and we arrange meet-ups too. Lifelong friendships have been formed through the group. One woman I met via the group recently told me that since going into remission, she’s preparing to climb Mount Everest! Stories like this are so inspiring.
One of the hardest things to get your head around if you live with Follicular Lymphoma is that it remains incurable despite hundreds of thousands of people suffering from it. The last major breakthrough in science was in 1975 which led to much better treatment becoming widely available in 1998. But with all the breakthroughs in cancer research, Follicular Lymphoma treatment has been left behind. I want this to change. That’s why today – along with some great allies — I’m launching a brand new cancer charity. This charity is called the Follicular Lymphoma Foundation and its aim is to try and find a cure – and quickly. My goal is to raise $20 million in the next three years to help fund targeted and advanced research into the disease and trials. Yes it’s a big ambition, but what’s the point of life if we don’t dare to dream big?
At this time of year it’s common to start setting goals for the year ahead. What’s my goal for 2020? To work towards finding a cure for Follicular Lymphoma so that all of us living with the disease can live well and get well.
To find out more about the Follicular Lymphoma Foundation please see:
Stay up to date or catch-up on all our podcasts with Arianna Huffington here.